It’s that time of the year when parents are divided. Some parents I know are looking forward to the final term of the school year when they can see their children in the school concert, beam over their child’s report, enjoy a happy and chaotic Christmas day with all the family, plan their summer break and imagine their child happy and excited to be back at school in the new year with their friends.
But for other parents, a dark feeling of dread is overcoming them. For parents with an autistic child, the end of year celebrations, Christmas and the long summer holidays are only slightly less scary than the horrific thought of settling their child into a new school or classroom next year.
Special occasions, unstructured holidays, change of routine – all of these things are hugely challenging for most autistic kids. I remember before my son Ben’s end of term class parties, the worry and stress we both went through. ‘What will happen?’ ‘Why do we have to have it?’ ‘Can I eat on my own?’ Ben, even at a young age, was very good at articulating his anxieties. Other autistic kids have the feelings but aren’t able to express them.
Then there was the Christmas thing: a whole day seemingly put aside for social interaction. A minefield of sensory overload, weird food and social confusion. After nibbling the odd bit of salad, he would sit at the table with his hands over his ears and then, as soon as he could, scurry into a bedroom with a book and close the door. Other children in the family would love opening their presents, playing games with each other and enjoying the food and fun. Their parents would happily ignore them, knowing they were having a good time and only paying attention if something got broken. But Ben had no interest in presents, couldn’t join in the games and was always waiting for me to take him home, alone. He wasn’t sad that he didn’t enjoy Christmas – but I was.
And those long summer holidays – what to do all day every day for seven weeks with a child whose only interest was numbers? After a while, watching car number plates started to pall, believe me! Of course, we did other things like meeting some of my friends who had kids, going to the park and the local pool, even doing structured Occupational Therapy sessions. And we used to go down south for a cheap break in a caravan park, where we’d visit park and beach (counting our footsteps), much like we did back home.
On the whole, though, holidays were a mixed blessing. I would have looked forward to the start of the school year (I did really) except for the anxiety that Ben and I would both feel about starting a new class with a new teacher. I think all parents feel some of this anxiety, but the parent of child with autism feels it much more. There is so much that can – and probably will – go wrong.
It is strange, perhaps, for me to be writing this is in the past tense, as Ben will start high school next year – a pretty scary prospect for any child, but especially so for him. At 13 years old, Ben is better at coping with the daily issues that used to trouble him. He can handle a class party; he quite enjoys Christmas day and other festivities, so long as he is allowed to retreat into his own space when he needs to; we have slightly more varied summer activities and can go away to more interesting places (we even flew to Tasmania last year). Of course, he is still very nervous about going to a mainstream high school and the week before term starts early next year will be tough, I’m sure.
But what does surprise me is my own relative lack of anxiety. I am concerned about high school and I’m trying to teach Ben some basic survival strategies, but I’m not lying awake at nights or feeling nauseous when we drive past the school. I no longer experience that overwhelming terror of the future that I used to feel.
What has changed, I wonder? Obviously, Ben has better daily coping skills. But then life is getting very complicated for him now he is 13 and the demands have far outstretched his skill development. He seems more different from his peers now than he did at six or nine.
I think the change is probably more in me. I have got used to living with unpredictability and the unknown. I no longer imagine I can control the future or what happens to Ben. Perhaps I have finally dropped my belief in the myth of maternal omnipotence.
Strangely, if you are the mother of a child with special needs, society expects you to be more powerful than other mothers. And yet, clearly, you have less control, as society is structured around the needs of typically developing children. Sometimes, I have felt like an animal in a trap, turning back and forth, fighting off dangers, trying to protect my son. If we were in the wild, we could run. But we live in the cage we call ‘normal life’ or ‘society’.
As a mother, I felt as though I was totally responsible for protecting my son and yet did not have the ability to do so, because I had so little control over other people and the structures of society (schools and so on). All responsibility and no control – I believe that this is the terrible loneliness that many mothers (and perhaps fathers, too) experience.
One of the things the journey of the past ten years has helped me to accept is that I am not – cannot be – totally responsible for my son’s well being. Other people can and have helped us a lot. And my son, too, must start to take responsibility for himself, to the extent that he can.
I don’t mean that I no longer worry about his future. Of course I worry about this. I won’t live forever and I’m no spring chicken now! But I have developed a kind of faith – in myself, in Ben, in other people, even in the far-from-perfect society we live in. I have faith that we will muddle through the next decade as we have muddled through the last one. It will be hard. It will often be sad, for me and for Ben. But it will also be funny and interesting and rewarding.
And that’s enough for us.
Do you have a question for Rachel? Ask away in the comments.
Rhonda’s note: A big THANK YOU for the lovely post, Rachel! We look forward to having you back with more tips and stories. Kisses to Ben.
I haven’t finished reading her book but a lot of what Rachel shares is so similar to my life with my son. Every page sends a feeling of comfort through my bones, because I have not yet met anyone who has a ‘life with autism’ as similar to mine. It’s helping me prepare for the future.
|Rachel Robertson is the author of Reaching One Thousand: a story of love, motherhood and autism(Black Inc., 2012). She is a Lecturer in Professional Writing and Publishing at Curtin University in Western Australia. She loves to read fiction and non-fiction, especially memoirs, and writes short fiction and personal essays. Her son, called ‘Ben’ in her writing, was diagnosed with autism ten years ago, when he was three. For more information about Rachel or her book visit her website at www.rachelrobertson.net.au. Photo supplied.|